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Powered by LifeTypeI woke up at 6AM because it turns out that is when the hospital does weekly generator checks which involves the power going out, which shuts off the ventilation fan briefly and triggers these color changing lights (that we didn't know about previously, see below), and so the nurses run around to turn off the lights in everyone's rooms. Seems crazy to me that the test is scheduled like that. I have thought multiple times that Boston Children's Hospital should hire my company, Medallia for patient and employee surveys, because there are a handful of obvious things that all patients and employees know, but the people in charge must not, because they could save money, make the hospital a better place for employees and for patients and generally make things more efficient.
The last long update ended February 3 in the evening. In the wee hours of February 4 (Sunday) she got a blood transfusion for her hemoglobin level, which was expected. (They’re killing off her bone marrow, so her own body is not making as much blood.)
The first round of tshirt orders has come in!
Local people can come pick up anytime. Please bring payment when you come if you haven't prepaid. Noah will be mailing faraway people's shirts soon.
I'll update later with how much has been raised for David's House. We haven't gotten all the payments in yet.
If you haven't ordered one and want to, just let us know what size and color you want! (Details here.)
The last post left you with Jon and Grace down in ultrasound. That procedure took two hours. They took hundreds of pictures - exploring all her internal organs. She does have vessel constriction in her liver, wgich is not unexpected with JMML. So since then, she has gotten another prophylactic med for that.
Jon and I finally finished chapter 1 of our Escape the Crate, which was fun. This context definitely requires us to do the untimed version.
After that, we played Board Game Arena with the kids at home and that was good. Then all of a sudden it was bedtime!
I spent that night (Thursday) at the apartment again and I slept much better on the different mattress. Jon, however, did not sleep well at all because of all the hospital things in the night.
T-minus seven days and counting. Transplant Day is Day 0 and they count all other days from that.
Yesterday, I left off while Grace was still sleeping. She woke up slightly grumpy, but soon was fully awake and her normal self. Chemo every six hours, blood draws every half hour (!) plus other meds, and she was hooked up all day. (At the end, you'll get to read about the fun time she had with Daddy before bed when she was finally unhooked for a while.)
A physical therapist came in to play and assess her current levels of moblity. During that time, she twice fell over for no apparent reason. Sometimes, her lines get in the way of walking and balance, but these two, she was just standing there and fell over like she had vertigo. The doctors did say that it would not be a surprising side effect to be dizzy. However, after those two episodes, it did not happen again. We do hover near, though, to catch if necessary. She also slipped in her "grippy" socks, which turned out to have the grips in the arch. But they got her a bigger size sock and the grips are more numerous and over the entire bottom of the foot.
She has a number of meds to take by mouth as well, which she has done fine. One yesterday (that turns out to be a once-a-week on Wednesdays) she actually reacted to with a yucky face and tongue out. So hopefully that will not give us trouble in the future.
She took a three and a half hour nap in the afternoon, hardly disturbed by vitals checks and med changes.
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Based on the number of supportive messages we got yesterday, I know you are all eagerly awaiting an update.
We arrived at the Dana Farber Jimmy Fund Clinic for lab draws and "here's what's happening" meetings. We sucessfully ordered Grace some food, and then we had to pop across the street for an audiology appointment. The audiologist had wanted to retest her right ear because of fluid, but there wasn't enough time for the fluid to drain, so the results were exactly the same (left ear fine, even though there is fluid, right ear slight hearing loss because of fluid.) She did not keep us long and will see Grace again in about 6 months.
Then back over to the Jimmy Fund clinic, and waited a long time. Jon got a message from some Hillsboro friends who saw us at the elvators in the morning, and so he spent a good time there with them, helping them interpret and understand the nurses' explanations of the chemo the husband was getting.
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Today is our last day all together as a family for a while. God blessed it by sending a beautiful six inches of snow that cancelled our outside activities for the day. We plan on spending it cuddling and playing games (and packing for Boston.)
Prayers for this week:
Praises:
We got a visiting nurse for Grace's dressing change instead of having to drive to Boston this weekend.
Snow Day!
Grace's bone marrow aspirate gave results that made the doctors happy (though I don't really understand the details.) The bottom line is that it means she is in a good position for transplant.
Requests:
That the chemo will do its job to wipe out Grace's bone marrow entirely while giving her minimal side effects.
That we will have good communication with the doctors and they will have good communication with each other.
That the other kids will be sustained and at peace while they have to be separated from their parents and sister.
Mental health for all of us as we deal with all the hard things surrounding these circumstances.
Thank you all so much for your support and prayers. We can feel it!
Monday, Grace had pre-transplant bone marrow aspiration and bone biopsy. That's kind of boring. The interesting surgery came right after that procedure.
Fertility preservation is something I had vaguely heard of. I know it's rather personal, but so is all this health information. We won't be sharing her future decisions (she can decide that for herself) but I think
the idea is so interesting that I wanted to share.
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Jon and I both went with Grace up to Dartmouth today. The dentist met with us pre-op and said after looking at the x-rays, she thought her front teeth looked really bad and she expected to have to take out the four upper front teeth. This just seemed horrible to us, but I signed the consent because it fits in the "best for transplant" box. Jon left after that, but he did figure out how to get on the list to play the piano so that was good.
I went with Grace into the PainFree clinic and she got the anesthetic directly into her line, without needing a mask first. She just laid there, eyes closing and yawning and I said, "Goodnight, I love you, I'll see you when you wake up." Then they gave me a pager and I went down to the chapel. I pled with God with tears that she might keep her teeth. I texted/emailed a few people also to ask that they plead for her teeth as well. Then Jon came down to the chapel and we spent some time there together, encouraging each other with scriptures.
Her oncologist called and asked when a good time would be to meet, so we were fine with going up then. So we talked to her and she is so compassionate. We like her a lot. She understands that there are things we don't like about what we have to do, and she did her best to help us understand and comfort us. After that meeting, we went down to the mall/food court and got some lunch, which was good.
Back up in the family waiting room, the dentist came post-op and told us that she had only had to take out the two front upper teeth, and then also several fillings and three caps on other teeth. So that was somewhat of a relief, and part of me wonders at God's sense of humor "well, I'll give you two, but I'll give the doctors two also." I hope that doesn't sound sacriligious to some people, but it helps me.
Grace also had an eye exam and a dressing change while under anesthesia, but that did not take very long. What did take a long time was for her to completely wake up. I got to hold her in my arms and rock in a chair, but she did a lot of napping and sort of waking up and napping again. Eventually, she was ready to read books and eat a popsicle and play with some toys. After that, she had her CT scan which was very quick.
Home for pizza and hymn sing, which is a blessing. She is now back to her cheery self. Her smile is so wide that you can see all her caps, even though they're in the back. And I do have to admit that the "all I want for Christmas is my two front teeth" smile is pretty cute. I'd like to post a picture sometime soon, but now it's time to go to bed. Thank you all for your prayers and support.
Please pray for Grace's appointments today. Extensive dental work at 11AM under sedation (fillings and crowns), and sedation means fasting from now until after she wakes up; and then CT scan in the afternoon. We are scheduled to be there all day, so coming home to pizza and hymn singing will be a relief and a blessing.
Warning: I'm feeling better now, but the following post pretty accurately how I felt for most of today.
After a good appointment in Hillsboro, they still wanted us to go to a pediatric dentist who was familiar with chemo/transplant issues, so Heather headed up to Dartmouth this morning in the snow.
She slipped off the road, thankfully pretty slowly, and hopefully just damaged the plastic front bumper, but there might be some more significant damage. The police had the car towed to a nearby garage and we picked it up on the way home (and did you know that they make 3 and 5 foot long zip ties? I stopped by a hardware store on the way to be able to temporarily put the car back together. We'll have it checked out at our mechanic tomorrow or Thursday to see what the plan is.
We went to the Methodist Church today. It was so refreshing. It was communion Sunday, which was such a blessing. It's been a long time since I took communion. They anointed both Grace and Faith with oil and prayed for them and us. Such outpouring of love and support. And I don't know exactly how to describe it, but being there in person helped me really feel all the support from all the churches and people everywhere who are praying for us.
For the most part, these last two days went pretty well. Grace was a trooper as we navigated the multiple confusing buildings and talked with many providers and was poked and prodded by various specialists.
Her audiology appointment went pretty well. The doctor was impressed with her development, and there were some humorous things, like when they were playing a "put it in" game, and she was supposed to feed the plastic dolphin a plastic fish whenever she heard "put it in" in one of her ears at varying volume levels. At one point, the doctor handed her an apple and then a green pepper and though she heard the sound, she didn't want to put the the fruits and vegetabes in the dolphin's mouth - apparently didn't think those were appropriate food for a dolphin, because she made a face, and was happy enough to put them in a box, when they switched games.
She had more trouble with the varying frequency tones, and the doctor was really good at reading body language to know when she had heard the sound even if she didn't follow the direction. The hardest game for her was to look to one side or the other to see a character on the TV screen when she heard a tone. She was mostly concerned about where the character went whnen the TV turned off, so I'm not sure how much was hearing versus not understanding she was supposed to look at the TV before it turned on. Sometimes, when the frequency would change or the volume was lowered, she would stop responding so it seemed like she wasn't hearing it, but then the doctor would go back to the frequency and volume that she knew Grace could hear and she still wouldn't respond.
But, it does seem like there might be some problem, possibly in her right ear, but the doctor saw some fluid, probably leftover from COVID or when her tonsils were clogging up her sinuses, which might have been causing the problem, but since since hasn't had chronic ear infections, she wasn't too concerned, though hoped to see her again post-transplant to see if there were any changes.